Myelodysplastic Syndromes - MDS: Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board, 05/2023

ON THIS PAGE: You will find some questions to ask your doctor or other members of the health care team, to help you better understand your diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with the health care team is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your cancer care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.  

Questions to ask after getting a diagnosis

  • What subtype of myelodysplastic syndrome (MDS) do I have?

  • What risk group am I in? What does this mean?

  • Can you explain my pathology report (laboratory test results) to me?

  • What is my prognosis?

  • How likely is it that my MDS will respond to treatment?

  • How do I find a doctor who specializes in the treatment of MDS?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

  • What types of research are being done for MDS in clinical trials? Do clinical trials offer additional treatment options for me?

  • Do I need to start treatment right away?

  • Who will be part of my health care team, and what does each member do?

  • Who will be leading my overall treatment?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the MDS, manage my symptoms, or both?

  • How often will I need to be treated, and for how long will I receive treatment?

  • Will treatment be given in the hospital, or can it be given at the doctor’s office or clinic?

  • Do I need someone to come with me when I get my treatment?

  • What are the possible side-effects of this treatment, both in the short term and the long term?

  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

  • Could this treatment affect my sex life? If so, how and for how long?

  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before treatment begins?

  • If I’m worried about managing the costs of cancer care, who can help me?

  • What follow-up tests will I need, and how often will I need them?

  • What support services are available to me? To my family?

  • Is there concern about this disease occurring in other members of my family?

  • Whom should I call with questions or problems?

  • What is the likely cost of treatment and supportive care?

  • Will the treatment team coordinate care with my primary care provider?

Questions to ask about having chemotherapy, immunotherapy, or a bone marrow/stem cell transplant

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • What side effects can I expect during treatment?

  • How long will it be before I can resume full activity?

  • What are the possible long-term or late effects of having this treatment?

  • What can be done to prevent or relieve the side effects?

Questions to ask about planning follow-up care

  • What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the treatment I received?

  • What follow-up tests will I need, and how often will I need them?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records?

  • When should I return to my primary care doctor for regular medical care?

  • Who will be leading my follow-up care?

  • What survivorship support services are available to me? To my family?

The next section in this guide is Additional Resources. It offers some more resources on this website beyond this guide that may be helpful to you. Use the menu to choose a different section to read in this guide.